Diagnosis: How long does it take to get your ear around it?

2013-05-16 14:48:26 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

Apparently, for me, it can take a while.  Thankfully, the team at Akron Children’s are PROS.  This ain’t their first trip to the rodeo - and, unfortunately, they have to deliver far heavier diagnoses than we have been given, so they know how to do it.

For example, when your Help Me Grow social worker goes with you (notepad and pen in hand) to a 2+ hour long appointment at the NeuroDevelopmental Science Center, you probably aren’t getting great news - cuz it ain’t his first trip to the rodeo either. (PS: Thank you, Tim!)

I have learned to pick up on the verbiage. At least one doc or therapist will drop the name of the next diagnosis coming a couple of weeks ahead (no idea if this is intentional, but when the terms are familiar to me,  it’s not as scary when I read them in a typed report.)

It gives you, as a parent, time to marinate. Time to Google, time to WebMD (I DO NOT recommend this - worst case scenarios!) and time to absorb the fact that your kid’s life might be a tad complicated.  It isn’t tragic (and there is plenty of tragedy in young lives) so it also gives you time to accept it and be grateful for the news you know is coming.  It’s a new diagnosis - and thankfully, it’s not a tragic diagnosis (like someone else may get today in a conference room or doctor’s office for their sweet child).  It’s just a diagnosis - an ICD 9 code. No big deal.

The latest diagnosis for Baby Jude is sensory processing disorder (SPD).  And this one has taken me awhile to accept.  For the life of me, I can’t tell you why I took cerebral palsy, stroke, hemiparesis (weakness on one side of the body), developmental delays, dysphagia (swallowing disorder), visual impairment, etc., in stride . . . but I did.  SPD has taken me awhile.  That is until I intently watched him and listened during his recent Feeding Clinic evaluation.  And, until I read the report that came in yesterday’s mail.  It’s pretty clear.

As Baby Jude sat in the high chair, with me trying to feed him (talk about being humbled. . .your HUNGRY 16 month old refuses food you are offering in front of 2 highly trained professionals, oy vay!), the speech pathologist is noticing movements in his lips. And how he “skims” food off the spoon versus wiping it clean. How he bats his right hand into his face or his head into the high chair. How he swishes food around in his mouth without swallowing. Is it a sensory thing or a dysphagia thing?  Lots of questions, more information to absorb. Remember, I was still marinating! I remembered  phrases his team has used, recently and not so recently,  and the pieces came together.

Sensory Processing Disorder.   The weighted blanket, the TIGHT hugs, joint compression, Nirvana (yep, he is a major Kurt Cobain fan), the swing.   Jude needs things in extremes to keep his attention and calm, including food.  Garlic and paprika for veggies, cinnamon in fruits.  Foods need to be hot or slushy cold.  His high chair has been moved a baker’s dozen times to find the right spot. Lighting is important for low vision.  Finger foods are offered on black construction paper. (Have you ever tried to pick up a cheerio off a white tray with limited vision?)  He has struggled through a MAJOR visual impairment so DUH, Mom - I get humbled A LOT!  Eating, for Baby Jude, is like opening your mouth to trust a bite of food with a blindfold covering your eyes.  Who wants to do that?

Back to the SPD. I listened to the team at the Feeding Clinic. We have a “feeding plan” and I will do my best to feed Baby Jude (4-5 intentional food offerings per day + 4 times of tasting and play with food per day).  I will also feed his ravenous need for sensory input.  At the same time, you have to allow nature to take its course. He is still developing.  He operates around a 7-8 month age level now. Do you know any 8 month old who eats cheeseburgers?

So, it’s no big deal that his most recent diagnosis of sensory processing disorder is, in fact, a reality.  It’s just like all the others (and the others to come), a diagnosis is nothing but a label.  And just because a report gives Baby Jude a new, non-tragic label, it doesn’t mean he has to wear it.

As always, we are Grateful, Prayerful & Hopeful.

Read more about Baby Jude and Jane from the rest of Sarah's blog posts.

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